In the last few weeks, Amelia has begun having a very scary type of seizure with increasing frequency. Back in July, she had one nocturnal seizure (a seizure that takes place during the night while the child is asleep). Now, in the past three weeks, she has had a seizure about 50% of the nights, usually when she is just falling asleep, but sometimes in the middle of the night. These seizures are generalized, and involve the whole icky seizure spectrum, from vomiting and incontinence, to post-seizure echolalia (saying the same thing over and over and over and over...ad nauseam), anxiety and sometimes even a period of intense wakefulness before she crashes into a very long sleep. The morning after these seizure nights, she sleeps very late in the morning, sometimes until noon. Obviously, this has consequences for our whole family, beyond the worry and insomnia for parents, destroying our daily routine, wreaking havoc on our new school schedule, and deterring us from family activities that increase stress during the day and inevitably lead to nocturnal seizure activity.
Today we canceled our much-awaited trip to church camp this weekend. How can you rationalize going somewhere so your healthy kids can have fun, knowing the whole time that your ill child will seize the entire weekend because of it, potentially having a life-threatening night seizure literally 50 or 60 miles from the nearest hospital and a helicopter ride from a neurologist? The older kids are disappointed, but so compassionate. They immediately hugged and comforted Amy when I told them the news this morning, and we planned something else fun...a trip to Grandma Nel's for the "Bigs" (as they call themselves), and an orchard excursion for Aaron and I and the "Littles". This will allow us to walk the tightrope between enjoying family life without putting Amelia at increased risk for a major health event.
As the fields ripen for the last harvest of this nebulous Indian summer season, we look forward to a fall packed with hospitals and clinics and doctors and procedures yet again. Facing up to a third fall of this is like walking into the torture chamber knowing exactly how you're going to be tortured. Yet the stream of thankfulness also runs ever deeper, and the spiritual muscles are just flexing now to take on an old familiar task, drawing on a wellspring of faith that has filled, through God's grace, many times before, a reservoir of such abundance now that you can count on it's being there. I live, therefore I praise (Psalm 146:2). She lives still, even though so often in broken ways; therefore I praise.
As October fills with visits to Mayo and November fills with cancer tests and epilepsy monitoring in the hospital, we feel once again that we have totally lost control over our schedule. Through other circumstances, we are no longer leading small group, which will offer respite and more flexibility in our weekly commitments. We've pulled back from other ministries and activities, until our schedule looks mostly blank, peppered only with clinic visits and a few enjoyable homeschool activities. Finally, we give in to this life. Admit it is our life. Admit we must pare down and pull back and focus inward. Yet, I write, and sing the Gospel on the wings of the internet. I pray that God opens doors while others are slamming shut. That He heals us...if not our bodies, that the healing and building and breaking and loving of our souls keeps watering us deep so that we can face the trials of another weary tomorrow.
Please lift us up in prayer:
- Amelia's safety, especially protection of her breathing, during nocturnal seizures
- Successful treatment of her epilepsy, elimination of the seizures
- Wisdom for Gen's oncologist as he decides about scans/treatments for this fall (next appointment is October 5th)
- Comfort for our healthy kids as they face limitations that continue due to Amelia and Gen's illnesses
- Comfort for us as we go through some trials at our church
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